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Volunteer Advocate


Cystic Fibrosis Canada joins inter-charity coalition to “Protect Our Access”
October 21, 2020

TORONTO, October 21, 2020— Cystic Fibrosis Canada is working with health charities and patient groups to launch a campaign to ensure Canadians are not denied access to breakthrough drugs, like the cystic fibrosis (CF) drug Trikafta. The campaign aims to influence policy and increase public awareness of the proposed changes to the Patented Medicine Prices Review Board (PMPRB) guidelines and their impact on Canadians.

The inter-charity coalition has formed to raise public awareness that Canadian’s access to new life changing medicines is at risk due to the PMPRB changes scheduled to take effect in January 2021. Since the start of the review process, Cystic Fibrosis Canada has advocated that the changes have gone too far and could continue to create an environment that discourages manufacturers from bringing important cystic fibrosis medicines to Canada. This is something Canadians are already seeing with the breakthrough cystic fibrosis drug Trikafta.

“Joining this coalition is a chance to bring these issues to the attention of more Canadians. While people with cystic fibrosis are the first to feel the negative impacts of these guidelines, many other Canadians will be next, as drugs for blindness or other diseases face a similar battle for access.” said Kelly Grover, President and CEO of Cystic Fibrosis Canada.

Trikafta is the single biggest breakthrough in cystic fibrosis history. It has the potential to treat up to 90% of the cystic fibrosis population in Canada, but has yet to be submitted to Health Canada for approval. When the manufacturer was asked why the delay, they pointed to the uncertainty created by the changes to the PMPRB guidelines.

The patient organizations behind the new campaign, “Protect Our Access”, include:

    • ALS Society of Canada
    • Canadian Cancer Survivor Network
    • Coalition Priorité Cancer au Québec
    • Colorectal Cancer Canada
    • Cystic Fibrosis Canada
    • Diabetes Québec
    • Fighting Blindness Canada
    • Lung Health Foundation
    • MitoCanada
    • Ovarian Cancer Canada
    • PROCURE – The Force Against Prostate Cancer
    • Québec Breast Cancer Foundation
    • The Leukemia & Lymphoma Society of Canada

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